INVITED AND SPECIAL SESSIONS
Wednesday, October 26
10:00 AM-11:30 AM
Social Issues Session II
SESSION 5 - Genetic Information: Is Knowledge Power?
Ballroom A-D
Co-Moderators: Bonnie S. LeRoy, University of Minnesota, Minneapolis; and Mary Z. Pelias, GenELSI Consulting, Inc., New Orleans, LA
It is anticipated that genomic medicine will soon use genetic information to provide a personalized predictive risk assessment so that individuals will have the opportunity to alter their health behavior and ultimately prevent or delay disease. In addition, there is promise that this information will be used to improve treatment options through advances in new pharmaceuticals. In some ways, these predictions are starting to actualize. However, in the process of developing new technologies to better predict risk, volumes of individual genetic information are being generated and stored. This process in and of itself is not without risk. But it is difficult to define and control the risks. It is therefore difficult to weigh the risks in genetic counseling and patient decision-making.
Some questions we would like to address in this session are the following: How do we adequately prepare individuals to cope with their decisions and how do we face the challenge of obtaining informed consent from an individual when the results affect the entire family? What is known about the risks to generating this information? Is this information alone a different kind of health care risk? What is the value of this information to patients and families? What are the responsibilities to patients and families inherent in generating this information?
10:00 AM Introduction. Bonnie S. LeRoy and Mary Z. Pelias.
10:10 AM A million to one: Risk assessment in the genomic era. Michelle Fox, University of California, Los Angeles.
10:30 AM Assessing the value and impact of information: A consumer perspective. Sharon Terry, Genetic Alliance, Washington, DC.
10:50 AM The duty to recontact. Mark Rothstein, University of Louisville, KY.
11:15 AM Questions and answers.
